“A Battle with No End Date” (A Brain Mets Story)

This patient story was originally published by .

Ronald Piscitello was only 47 years old when his life changed completely — not in an instant, but over the course of a long, confusing year. Today he is a changed man, and his wife and family are grateful to have him back after a frightening diagnosis and life-altering surgery. Ron beat some long odds, but thanks to the skill and wisdom ofand theat NewYork-Presbyterian/Weill Cornell Medical Center, he is now a survivor of a very serious brain tumor.

Ron was at the top of his game in 2017he was a successful executive at a nonprofit on Long Island, with a loving wife, two young adult children, and a home on the south shore of Suffolk County. His wife, Donna, says they were like any loving family, “working and enjoying the kids, looking forward to life events, and just laughing our way through the journey.” None of them thought too much about a strange issue where Ron started having trouble swallowing. Endoscopy didn’t reveal anything to worry about, but when the problem didn’t go away he was referred to a gastroenterologist, who ordered another endoscopy. That, too, showed no cause for concern and the assumption was that he had a little reflux, nothing more.

Donna recalls now that it was the weight loss that worried her more than anything. Ron was getting thinner as the swallowing issues were becoming worse, so his primary care doctor ordered blood work in search of more clues. “We were so relieved that all those results were normal,” Donna says, “but we were very confused by his deterioration.”

"We’ve made a lot of progress over the past decade, and have new treatment options, so we are seeing longer and longer survival times."

Then in October 2018 Ron experienced a grand mal seizure. An MRI revealed a large mass in his brain, as well as another tumor in his lung. A neurosurgeon who was called in to consult confirmed the presence of a brain tumor and said it should be removed, and soon — that very weekend, even. It wasn’t possible to say for sure, but it was likely that the brain tumor had been caused by spread from the lung tumor — and metastatic brain tumors are very serious indeed.

Medication controlled the seizures and brain swelling, and much to their surprise Ron and Donna were told that instead of having surgery he would be discharged the following day and that they should call the following Monday to make a neurosurgical appointment.

Ron's MRI scan held a real shock for him and his family: A large metastatic brain tumor

“We were in complete shock,” says Donna. “He wasn’t having seizures, but he was so unstable that we were in disbelief he was being sent home. Knowing that he needed brain surgery, I immediately started searching online for the top neurosurgeons in New York State for metastatic brain tumors. All I knew was that I wanted the best for my husband. When I found Dr. Ramakrishna and read his biography, my instinct immediately was that yes, this is who I’m calling.” Donna made the appointment right away and she and Ron went in to meet the neurosurgeon.

They were both impressed with how calm and methodical Dr. Ramakrishna was. He told Ron and Donna that yes, the tumor needed to be removed, but no, it was not an emergency. He ordered another MRI scan along with some other diagnostic tests, and only scheduled the surgery once he had all the information he needed.

“I don’t even remember if Dr. Ramakrishna told us what kind of tumor this was,” Donna says now. “We were just numb.” It would not be confirmed until the surgery, but Dr. Ramakrishna was confident that Ron had athat the lung cancer had spread to the brain before the original tumor had even been detected.

“This is a serious diagnosis,” says Dr. Ramakrishna, “and it is often assumed it’s an immediate death sentence. But we’ve made a lot of progress over the past decade, and have new treatment options, so we are seeing longer and longer survival times. That’s our goalmore years for patients to spend with their families, with better quality of life.”

Shortly after that initial seizure, Ron was headed into surgery. Donna says now that Dr. Ramakrishna’s calm demeanor and unfailing responsiveness assured them again and again that they had made the right decision in choosing him.

“The prospect of brain surgery was quite frightening, to say the least,” Donna says. “But we were eager to have it done so Ron could be free of all the pain and anguish that came with the diagnosis. We really didn’t know what to expect, since this whole experience was so foreign for us. Dr. Ramakrishna’s calmness made it seem like, ‘We got this, no worries. See you in a few hours.’ Being his patient is something we will always be grateful for, and that’s an understatement.”

Ron's post-operative scan shows that the tumor is completely gone (the white area at right indicates the cavity left where the tumor was removed).

Ron underwent open surgery in November 2018, and a few hours later Dr. Ramakrishna told the waiting family that he had removed the entire tumor and the surgery had been a success. Donna was flooded with relief and was happy to be there when Ron awoke in recovery. “When he woke up and asked for a breakfast sandwich at midnight, it confirmed my intuition about Dr. Ramakrishna,” Donna laughs now. “He had predicted a smooth recovery and estimated Ron would need a week in a rehabilitation center after discharge. In fact, it all went so well that he went home after just three days in rehab.”

Having had the tumor, the seizure, and the surgery took an undeniable toll on Ron, who also had to be treated by an oncologist for the original lung tumor. He now depends on his family more than he did before. He has physically recovered, but has some cognitive effects that can be a challenge for the entire family. “It was all so hard,” says Donna. “It has been very hard for Ron to accept the fact that he is different now and will never be the same, but we were determined to have our man back at any cost. Our family has fought this as a battle with no end date, and we have grown stronger and closer than ever.” Considering what they nearly lost, Donna says, they treasure every day now.

"This diagnosis was something out of a horror movie. Dr. Ramakrishna made it seem that this journey of ours was his only priority."

“Ron is more than five years out now from his lung cancer brain metastasis,” marvels Dr. Ramakrishna. “This is remarkable, and was unthinkable even just twenty years ago. I think this is a reflection of many factors. First, surgery is safer and more precise than ever, allowing us to diagnose and remove tumors with minimal downtime for the patient. Second, we work in collaborative multi-disciplinary teams. I’m proud to co-lead ouralongside great physicians likeDr. Kathryn Bealfrom Radiation Oncology,from Neuro-Oncology, and all our colleagues from Rehab Medicine, Neuroradiology, and more. This collaborative approach we use ensures that we think of the best, most personalized treatments for each patient. Finally, there are so many new treatments, ranging from surgical (laser therapy) and radiation (Gamma Knife) to targeted therapy, that we are sometimes able to treat brain metastasis with drugs alone without surgery or radiation.”

Hear Dr. Ramakrishna talk about advances in metastatic brain tumor treatment in this video.

Donna is grateful for Dr. Ramakrishna’s dedication, and for his willingness to take her calls and answer her questions at any time of day. “This diagnosis was something out of a horror movie,” says Donna. “We were so scared of the unknown, and we worried about 'what next?' before we finished each moment. Ron didn’t have the opportunity to be diagnosed while he was stable, so he couldn’t really prepare for what was about to change. Dr. Ramakrishna made it seem that this journey of ours was his only priority.”

Thinking back on the happy family they were five years ago, Donna says the biggest difference is that now they all have moregratitude and appreciationthey spend their time thinking not about what they don’t have, but what they do. Their lives are different now, but they are together, and they stay focused on that.

“With any disease or surgery you just have to live one moment at a time,” she says. “Conquer today and beat tomorrow, that’s our motto!”